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Patient retention and linkage throughout
the cascade of HIV care remains very low, placing the concept of ‘test and
treat’ as part of the solution to ending the AIDS epidemic in question, but
community-based support can play an important role in improving retention in
care, the 19th International AIDS Conference (AIDS 2012) in Washington DC heard
this week.

Dr Matthew Fox of the Center for Global
Health and Development at Boston University noted that systematic
review shows that the median retention of patients prior to starting antiretroviral (ARV) treatment in sub-Saharan
Africa is only 29%. From HIV-positive diagnosis to CD4 results being obtained,
only 59% remain in care, while only 46% of patients remain in care from this
point until reaching eligibility for ARVs. Once patients are declared eligible
for ARVs, only 68% reach the point of ARV initiation. On average, only between
60 to 70% of patients remain on ARVs for two years after initiation.

Dr Rachel Baggaley of the World Health
Organisation (WHO) presented findings of an electronic survey of more than
twenty countries to determine the main reasons for patients being lost along
the 'cascade' of HIV care. The survey found that people were unlikely to access
HIV testing due to a lack of perceived benefits, stigma, discrimination, fear
and denial. From the point of positive diagnosis to enrolment in care, patients
were lost mostly due to stigma, denial of positive status, poor links and
referrals from testing sites to health services, or due to poor post-test
counselling.

Once enrolled in care, patients were likely
to be lost due to delays in receiving CD4 results, or due to lack of CD4 testing,
crowded clinics or far distances to clinics. Once patients are determined to be
eligible for ARV initiation, they are often lost in care due to fear of ARV
side-effects or disbelief in the effectiveness of ARVs, or due to drug stock-outs.
For those patients on ARV treatment, the main causes for leaving care were
found to be due to the high pill burden, high number of appointments and
transportation costs and time burden, or patients stopping ARVs because they
feel better.

Dr Florian Scheibe of the Institute of
Public Health, Heidelberg University, Germany, showed high rates of loss to
follow up during the first year of pre-ARV care at four rural health centres in
Inganga district in Uganda. In this study, 81% (1634 of 2024) of the pre-ARV patients were
lost-to-follow-up. More than 93% of those patients who dropped out of care did
so after their first visit to the clinic. This retrospective cohort analysis
reviewed pharmacy registers of all HIV-care-enrolled patients from February
2005 to August 2009. In all, 26% (521 of 2024) of the pre-ARV patient files were
missing.

Community-based adherence support improves retention

Adults receiving community-based adherence
support were significantly less likely to be lost to follow-up and had lower
mortality and improved virological suppression after starting ARVs, according
to a prospective cohort study that compared patients receiving community-based
adherence support to those not receiving community-based adherence support from
ARV initiation.

Clinic-based, community-outreach adherence-support healthcare workers called 'patient advocates' were introduced in 2004 by
Kheth’Impilo, a South African NGO that supports district scale-up of ARV treatment in 142
public-sector health sites. The patient advocates ensure ongoing adherence,
counselling and psycho-social support at the community level and support
community services to ensure the continuum of care.

Six per cent (1185 of 19,668) of the patients who
received community-based adherence support were lost to follow up, compared to
9.5% (4498 of 47,285) in those who did not receive support (p< 0.0001): Virological
suppression at six months was also higher in the group receiving support at 76.6%
(95% CI: 75.8%-77.5%), compared to 72% (95% CI: 71.3%-72.5%) in those who did
not receive support (p< 0.0001). Only 4.9% of the supported patients died,
compared to 6.3% of those who were not supported (p< 0.0001).

Active tracing of children on ARVs increases retention

Loss-to-follow-up of children on ARVs was 11.8%
at 6 months and 16.8% at 12 months in two large public clinics in Lilongwe,
Malawi, between April 2006 and December 2010. According to the multivariable
analysis, risk factors for loss-to-follow-up were wasting (aHR 1.6, 95% CI
1.17-2.18) or being less than two years old at ARV initiation (aHR 1.55, 95% CI
1.02 – 2.37). Gender, distance to clinic or advanced WHO stage were not found
to be statistically significant risk factors.

Active tracing of children on ARVs lost to
follow-up was established in July 2006. A list of children who had missed an
appointment by at least three weeks was generated each month and were traced up
to three times by phone or home visit. Of these, 78% of the children were successfully
traced and retained in care. After tracing, the lost-to-follow-up rate reduced
by 62% from 22.7 to 8.5%, and mortality estimates increased from 2.6 to 4.8%.

The WHO survey recommended the use of
‘accompaniers’ (lay health workers) to assist in the tracing of patients from
one point in the care cascade to another. In addition, it was recommended that
a minimum package of pre-ARV care and prevention services is required to
provide effective interventions and retain people at this stage, where most
people are lost because no service is being provided to them. The survey also
recommended point of care CD4 counts and telephone SMS return of results.
Increased decentralisation and integration of ARV rollout with other health
services, decreased number of visits and increased task-shifting and peer
support would also increase ARV retention according to the WHO survey.

References

Fox M An
introduction to the cascade of care. 19th International Conference on AIDS,
abstract WEAE0201, Washington, DC, July 2012.

Ardura Garcia C et al. Risk factors and true outcomes of children lost to follow-up from
antiretroviral therapy in Lilongwe, Malawi. 19th International Conference
on AIDS, abstract WEAE0203, Washington, DC, July 2012.

Scheibe F et al. High rates of loss to follow-up during first year of pre-antiretroviral
therapy for HIV at primary health care level in rural Uganda. 19th
International Conference on AIDS, abstract WEAE0206, Washington, DC, July 2012.

Baggaley R et al. Improving retention at all points in the HIV care cascade: the WHO
perspective. 19th International Conference on AIDS, abstract WEAE0207,
Washington, DC, July 2012.

NAM’s information is intended to support, rather than replace, consultation with a healthcare professional. Talk to your doctor or another member of your healthcare team for advice tailored to your situation.

The Community Consensus Statement is a joint initiative of AVAC, EATG, MSMGF, GNP+, HIV i-Base, the International HIV/AIDS Alliance, ITPC and NAM/aidsmap

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checking whether this is the most current information when making decisions that may affect your health.

NAM’s information is intended to support, rather than replace, consultation with a healthcare professional. Talk to your doctor or another member
of your healthcare team for advice tailored to your situation.